Kisqali on PBS, very few will get it.
I logged in today to share a couple of community
services I have been using in my area and was deeply concerned about the tone
of conversation coming from disgruntled members surrounding the availability of
a new CDK
inhibitors Ribociclib (Kisqali) on the PBS. I am dismayed as I do
not believe BCNA has mislead anyone. It
is an accomplishment to get any drug up onto the Pharmaceutical Benefits Scheme
who are not transparent, so it’s very hard to gauge what, if any progress is
being made. BCNA informs, empowers,
represents and links together people whose lives have been affected by Breast
Cancer. Their existence is for their
members and as a Consumer Representative, I have seen first hand the work they
put into advocating on our behalf, working with stakeholders such as politicians,
pharmaceutical companies, health bureaurcracies, cancer medical services and other
groups and who have vested interest in our Health, TGA and PBS systems, it’s no
walk in the park. Please don’t disparage
or undermine the work that is being done in this area for our benefit.
I agree that the scope for the use of this drug
is very limited, and this is disappointing, but it’s a start, not the finish. Frankly we are at the whim of pharmaceutical
companies who determine if our market is worth investing in and there also has
to be political will, this is where BCNA
can have an influence but there are no guarantees. I feel BCNA has been attacked because they
are a soft target. Its not so easy to
get a voice elsewhere, so please don’t attack an organisation that has your
concerns at heart.
In 2015 there was a Senate
Inquiry to consider the availability of new,
innovative and specialist cancer drugs in Australia, including "the timing
and affordability of access for patients".
BCNA’s interest was to advocate for Kadcyla and Perjeta drugs to go onto the PBS. A highlight for me as a cancer survivor, was
personally presenting the case for Kadcyla to go onto the PBS. This process took 4 years!
Australia
is behind in the adoption of medical technologies, and there are a growing
number of patients unable to access some medicines compared with their overseas
counterparts. Fundamental reform to the way cancer drugs
are made available requires broad consultation with stakeholders and society. BCNA gives us a voice.
Living
for 12 years with metastatic cancer, I do empathise with the group who are struggling
to get what they need to live. We do
often look down the barrel of a gun but it’s nobody’s fault that we have metastatic
cancer. I too have had times when I was going
to die but I am a strong advocate for myself and others. We need BCNA to be with us to amplify our voices. Attacking
BCNA whose existence is to make our lives better, who identifies us as a
crucial and integral part of them isn’t the way. Everyone
is entitled to voice their concern, but I for one know that BCNA will continue to
fight to get better outcomes for us.
In the
meantime it’s up to us, through our Oncologist and others to keep ourselves top
of their mind as its them who are our personal advocates in getting the latest
technology to keep giving us a life.
Cancer is just part of my life now, and I always try to have hope. I would like to see a philosophy of “Patient
Centred Care” but political will has to be there to make this happen. My
medical team are doing a fantastic job keeping me well. Nonetheless as I have expressed, there are
many areas that need to catch up, so we need to keep the conversation going so
the powers that be start listening and make changes to the existing for the
better.
I count my blessings
that I am still here enjoying life with my family and friends. I want this for other people who need life-changing
treatment as I have had.
Karen C
Comments
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@Karen_C
I struggle to understand why some are prepared to knock BCNA - I have walked away for now to keep control of my emotional well being
I am thrilled with the work that BCNA do and more so very pleased to read a story like yours where advocacy and great medical team work is enabling you to keep going!
Take care and thank you for speaking up
7 -
Hi @Karen_C,
so lovely to hear from you and what an amazing statement you have written,yes it has been hard to see some of the negative comments that have been written lately, I put a post up myself,only to say how complicated this whole situation is,and I dont get all the fine print, I was always aware right from the beginning that either of these drugs if put on the pbs would be for first line treatment only, I put my faith in my Oncologist and know that he will be doing everything he can
to prolong my life,these are the cards we are dealt with and we have to take a certain responsibility for that, BCNA have done a fantastic job advocating for us, I will keep on keeping on and like you I do count my blessings and am grateful for everything I have, anger achieves nothing, I dont have time for it, I have just returned from my first visit with an exercise physiologist, and enjoyed it, I go again next week,like you as well, I am doing everything I can in my power to keep myself well, happy and stress free, I can now go to bed and wake up in the morning and truthfully say that my diagnosis is NOT the first thing I think about,its taken 5 years, and a lot of help and support along the way but I am in a good place at the moment,well at least a good a place as you can be with this disease, life is for living, and thats exactly what I am doing,I firmly believe that if your mind is in a good head space, the rest will follow, I have down days thru ill health but I do not feel guilty any more about that, I have a "down but not out day",get it over and keep going, I live life in the slow lane now, and I rather like it,
keep well,
wendy553 -
Hi @Karen_C
The other conversations had been closed, as per the BCNA comment on the posts. It is a shame you began yours with such a title instead of making it a positive one like "Thanks to BCNA and their great work for us".
Yes, BCNA staff do as much as they can given all the restrictions they must face.
Perhaps those concerned could be putting the call out to their local government representatives to help get the drug more widely available - sort of crowd funding - put the pressure on. Someone told me there is a website where one can add petitions (I have no idea as I am not too computer literate) so maybe someone could start that with stories and outline the requirements ?
ON BEHALF OF THE MAJORITY - THANK YOU BCNA.4 -
Hi Summerhill38, great idea. I have heard about this as well but unsure where. Perhaps this is something the social media team at BCNA could run with.
Have a good day
Karen C0 -
To all the computer-literate ladies out there - Help !
What and where is the site where people start petitions ?0 -
Well said, @Karen_C - BCNA is here 'for us' and fights 'for us' ..... I was thinking of putting up a Thank You post to BCNA myself, so hope EVERYONE reads this.
I was dismayed to see the attacks on BCNA - when all they've done is advocate on our behalf. It isn't THEIR fault that the restrictions were put on certain groups within those with Met BC.Unfair, YES.
BCNA's fault? NO
I have an old saying that I repeat even now (perhaps with more conviction now after being diagnosed with BC .....)
"Life's a bitch, then you die - then they shovel dirt in your face!"
There ain't NO-ONE getting out of this world alive! Just the time-line varies.
Life isn't always fair - and we've all discovered this, just by our initial diagnosis. Life can be a real bitch.
You have to play the cards you are dealt with - some of us get off with a lighter sentence than others - we don't know if there will be complications at a later date - but no use worrying about it just now, as it may NEVER happen!
Thank you to BCNA and the mods - it is NOT EASY to be a moderator on ANY forum - and when so many of us are going thru life & death decisions - it is even harder still as the Mods are going thru it as well. That's why BCNA was even started!
All power to BCNA
All power to the Mods
All power to US!! xxx Hang in there, guys!! xx
PS .... is it:
https://www.change.org/start-a-petition8 -
I for one, am grateful. I am on kisiqal and I am delighted its on PBS. I signed partition and hope BCNA will always fight for us, no matter how few it helps1
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@Bbbcm ,,, do you have a link to the petition that you found?
@Summerhill38 - Wendylou is no longer with the forum.
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